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Hello,

My name is Di and i am so delighted to have found a site in Ireland to share. My daughter was diagnosed 7yrs ago in Crumlin with PHACES and is doing well at the moment , a few post coarctation issues to be discussed later as with her H. OMG i am just bowled over to have stumbled on yis..Congrats on the site an i look very forward to many chats...

I'll await response and take it from there...i hope that any of you who have been going thru' the rigorous tests etc have come out the other side with some favoured answers..

Di.

Hi
Just stumbled onto this site and have to congratulate you on it, I have a pws on my face.You are lucky to have this site to refer to, Im 40 so as you can imagine my parents had no way of getting info about it. I've had laser treatment but wasnt very successful as i was in my late twenties so stopped when i was pregnent on my 3rd child.
Keep up the good work

Hi Jassg,
Glad to help! The first few times are the hardest. After that you sort of get the hang of it. Keep in touch!!!

Angela

Hi Angela

Thanks a million for all the information. Sorry am only replying now as had forgotten to check this site. My son has had his first laser treatment and it was a lot easier on him than I expected. He was in great form afterwards and didn't have much bruising. Just wanted to say thank you for reassuring me. I felt much better about bringing him in for the treatment after your posts.

Thanks again

And a Happy New Year!!!!!

Hi Guys

Just want to wish everyone a happy christmas and peaceful new year.

caroline & family

Hi Jassg,
Her Birthmark has faded an awful lot. You can still see it, but it was very dark red and now its a dark pink. Really good!!! To be honest, it was easier when she was small, as she was happy when I was there. The playroom before is great, so they are kept very occupied. The worst bit is when they put the little mask over their face for the gas as they hate that but its only for 10-15 seconds. Then they go limp. I hated that bit and leaving her. She was fine after. Loved her bottle, and they get a yoghurt and biscuit. Brace yourself for how they look, as the bruises from the laser are up when they come back from theatre and it looks bad enough. You can see my little girl on the main site showing a side view of her laser bruises. But they do fade over a week or two. They tell you about giving Calpol/Nuerofen after, but to be honest she always seemed fine after sleeping on the way home. You are out very quickly after. And then its applying the gels and moisturiser and sunscreen. You get used to it very quickly because you are doing it regularly, and you get to know all the faces!!! Any questions, feel free to post here, or I answer the "Contact Us" form on the main site. And Edette, the laser nurse, is lovely to talk to as well.

Good luck! And Happy Christmas!!!

Angela

Hi Angela,

Thanks for that. He will also be attending Crumlin. The laser nurse did also say it was good to do the treatment when they are young but I suppose I'm just a bit anxious about the anaesthetic as he is so young and won't know what is happening to him. Has your little girls birthmark faded a lot after all her treatment? Was she really upset after the first one?

Thanks again

Hi Jassg,

My little girl started when she was about 1? She was due to start earlier but she was sick on her first laser date and had to wait. From what I know, its better to have the laser done when they are small as its more effective. Your laser team would advise you as to when its best. Where are you having it done? We attend Crumlin. Thankfully, our little girl had no problem after her anaesthetics and she's had quite a few now. They had wanted to do as much as they could before she started school. She's in Junior Infants now, and almost finished.

Hope this helps!! If I can answer anything, feel free to ask! Angela

Hi All,

I'm new to this forum having just discovered this site. I'm hoping ye can help me with a question I have on the age your sons/daughters got laser treatment and whether you felt it was better to leave it until they are older. My son is 13 months old and has a port wine stain over his left eyelid and on a portion of his forehead. I was told he would be having his laser treatment sometime in January. I'm a bit unsure whether to hold off on it until he is older and maybe understands whats happening to him or is it better to go ahead with it when he is younger.

Thanks for your help